Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.
FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.
There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.
The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.
Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.
Education: A Patient's Best Weapon for Change
FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.
FSHD University is a place for you to gain knowledge, get connected, and find hope.
Latest Blog Posts
Teaching medical students is therapeutic
by Brian Jude Loiacono I have been volunteering to teach second-year neurology students about Facioscapulohumeral Muscular Dystrophy (FSHD) at the Renaissance School of Medicine at Stony Brook University. This is my fifth year of doing this, and I’ve discovered that this has been a source of self-help and motivation for me in managing my struggles…
Avidity begins Cohort C enrollment in FORTITUDE trial
Avidity begins Cohort C enrollment in FORTITUDE trial Avidity Biosciences has begun enrollment of Cohort C of the Phase 1/2 FORTITUDE™ clinical trial. Below is Avidity’s letter to the FSHD community and their answers to some FAQs: October 30, 2024…
Upcoming Events
Featured
Wellness Hour – Navigating the ADA
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about what our rights are under the Americans with Disabilities Act and how to ask for and get the accommodations we need. Joining us is Marisa Spain, who is a certified ADA coordinator living in...
FSHD Radio: Straight Talk with Tim Hollenback
Facebook and YouTubeOn the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen...
Feeling Fit with FSHD – Breathe, stretch, and flex
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In this “Feeling Fit” session, Frank Hanley will present the second half of the “Breathe, Stretch and Flex” exercises. He will review the exercises presented in the first session (breathing, neck, shoulders,...
We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.